October 21, 2011

. . . part two continues after an extended delay, much like the second half of those two-parter made for TV movies that you never end up watching. I tried Cipro for two and a half weeks, but it seems that it lost it's magic. The only benefit? It cleared up my raunchy breath, and the city of Toronto celebrated this minor feat.

Back at TGH, I learned that apparently no one at exercise rehab actually coughs--or coughs very much. As a result of this, after a few days of making a scene with my lovely, constant hack, one of the therapists dropped heavy hints that I should toss my hopes that Cipro would work again and revisit St. Mikes. Not wanting to be a disobedient little listee, I complied. Within 48 hours I had a quick appointment, PICC line inserted, and Homecare set up just in time for Thanksgiving weekend. 

P.S. they switched to NEW PICC lines. New, but not improved... I used my 'good' arm that usually takes only 15-20 minutes to insert a PICC--yet, this one took 45-60 minutes and really left it's mark.

Not being one to want to re-arrange plans to accommodate CFness, we still made it up to Collingwood for the weekend. It was nice to be able to do my IVs on a porch, in the warm (25 degree!?) weather rather than in the hospital. Small joys people, small joys.

Alas, all good things must come to an end, and after 14 days on meropenum and piptazo (my starter IV drugs of choice) things really weren't improving. My WBC remained 18, my pfts dropped ever-so-slightly from .70 (24%) to .68 (23%) my oxygen use in the past month has increased to 2 L while walking and 5 L while exercising (was previously using 3L for exercise), and my shortness of breath went through the roof. OH OH OH, and let's not forget my lovely inability to clear mucus AGAIN...

Hence, it was voted time for a drug switch and on Tuesday I agreed to trying out one of the drugs (Ceftazidime) I'm allergic to. Unfortunately, that meant coming back to 6 Bond for a few days so I could book at bed on the step-up unit (which is one step below ICU, one nurse for every two patients) and be desensitized. 'Desensitized' just means that they slowly infuse small doses of the drug into you until you reach the ideal dose and 'trick' your body into accepting it--the whole thing takes about 8 hrs if there are no complications. Thankfully, I did that all yesterday without a hitch!

Next step is getting out of here ASAP (they have to keep me for 48 hrs) and crossing my fingers that this med combo holds or improves things in the next few weeks.

Oh, and for those counting, October 19th was my sixth month anniversary of listing, and I'm in the room right beside the room I was in last time. WEIRD.

Over and out.